Saturday, April 9, 2011

Another sonogram, the joys of pregnancy, and life goes on

We had our next MFM specialist appointment yesterday at 8am. We took Jackson with us, and I'm very proud to say he did awesome. He watched the tv screen and played with his Spiderman magnet book we brought for home.

Addie's vent widths had increased, and there is now fluid backed up into her 3rd ventricle. But after all the blogs and stories I've read, I was mostly prepared for this. Would I have liked for her vents to have stayed the same size? Sure. But from everything I've read more or less fluid doesn't directly impact her prognosis. Her left vents went from 18 mm to 24 mm and her right went from 20 to 34mm.

Dr. DeStefano said she was 'shocked' that Addie didn't have an infection. To which I replied that I was so glad she had been wrong about that. She agreed with me! I got permission to go to Mom's for Easter but just barely. I'll be hitting 33 weeks that weekend and Dr. D wouldn't give the go ahead until she made sure Starflight went that far. Yikes! Not for me, but to get Addie to a hospital with a NICU as soon as possible if for some reason I went into pre-term labor. Thankfully I don't have a history of pre-term or the answer would have been NO! I assured her I would take it easy, be mindful of what's going on with my body and would not leave town again after that weekend.

She's leaning toward letting me go all the way til 38 or 39 weeks as long as Addie doesn't start showing signs of distress. We went ahead and decided to deliver at downtown St. David's so that there's no chance Addie and I will be at separate hospitals, me recovering from my c-section and unable to see her would stink. They have a high enough rated NICU at NAMC but they don't have the ability to do the shunt surgery there. And since we have no way of knowing if/how soon Addie will need to be shunted until she's born, there's no point in starting out at one hospital to just transfer her to another one.

I talked to Dr. D about the cord blood transfusion and she's very intrigued and wants me to keep her updated on the whole process. I'm so glad I like her! And that she's not all DOOM and gloom. I told her as much, that I appreciated that she didn't spend all her time telling me how bad it could be. The type of person I am, I googled it. I wanted to know worse case scenario. I *know* what can happen. Doesn't mean I want to hear it over and over again at every visit with the specialist.

We have our appointment with the head of pediatric neurosurgery at Dell Children's on the 25th. He'll be doing Addie's surgery to place the shunt. Feels good to have a plan in place!

On a lighter note, Melissa and I took the boys out for a Toys R Us shopping spree (Grayson had a gift card leftover from Christmas) last night, and then out for Mexican food. Then a late trip to Wal-Mart. It was nice to get out of the house and do something a little more normal. I'm still not buying any more things for Addie, but not out of fear but just because I really don't know what to buy her. The clothes we have are 0-3 mths. One hand, she is measuring large and her head will most likely be larger than a normal newborns. So we shouldn't need smaller sizes than we've already bought. If anything because of the increased size of her head, she may need different types of clothes, things that have snaps to get on without having to go over her head. Then again, her head may not be THAT much larger than a normal newborns and onesies are made to stretch at the shoulders anyway. Then there's the possibility that she could come early and need smaller things. Which all equals, not buying ANY more clothes for her at this point. I did tell Melissa we need to start stocking up on hats though!

After our walking around Toys R U and sitting in stiff upright chairs at the restaurant for 2 hours, walking around Wal-Mart HURT! I think I've come to the point of pregnancy that flip flops just aren't enough support. Stinks! I've never been this far along in the summer months to encounter this problem. But then again it's such a normal pregnancy problem to have, it was kind of nice. We are planning on this being our last pregnancy, so I'm trying to enjoy all of it I can for the next 8 weeks. Even the pains!

I finally got the pictures uploaded from our trip to Florida. We got home on Saturday the 19th after driving nearly 20 hours, crashed on Sunday and then had the routine sonogram on Monday where they found Addie's hydro. So needless to say, uploading vakay photos fell to the wayside. We had a great time visiting Mimi and now in retrospect, I'm especially glad that we had one last vacation just the four of us before we knew about Addie's condition. While I don't know what the future holds, I know the possibilities of life becoming much more complicated are pretty real. A nice, relaxed paced vacation for the four of us before we began this roller coaster was more needed than we even knew.

Grayson is doing really well in school, though continues to struggle with behavior. Mainly talking too much and wanting to do what he wants to do instead of what the teacher wants him to do. No clue where he gets that from. :/

Jackson seems to be enjoying his speech class once a week and is improving dramatically with his talking, putting as many as six words together at a time.

I spent a bit of time looking online today for swim lessons for the boys this summer.

Adam and I spent a few hours talking about things that need to be done before Addison gets here, planning our meals for the next two weeks, and setting up a cleaning schedule for each day of the week so we can try to stay on top of things without exhausting all our time and energy on his days off. I feel like this is important more now than ever, to try to get a routine set up before Addie gets here. Really it's something we should have been considering doing anyway with the impending arrival of a third child, but with the wide spectrum of possible issues Addie may be facing, the number of doctor's appointments etc, it's CRUCIAL we get a routine down. And as Adam and I discussed today, I'd rather spend the money it would take to hire a housekeeper on what's going to be a much needed date night once a month!

Funny thing about life changing events such that we are going through and will continue to go through. LIFE goes on. That's both the beauty and the tricky part of all this. Grayson still has to get up and go to school, bills still have to be paid, the house still has to be cleaned, groceries still have to be bought. So all the more reason to have a plan in place! I'm about to write up a poster of our daily cleaning routine including which chores are being delegated to Grayson and Jackson. Should be fun!

How a VP shunt works

Welcome to Anything Can Be

This blog came to be after we found out our unborn daughter had fetal hydrocephalus at a 28 wk growth scan. It is my intention to share her journey with not just our friends and family, but with anyone that is experiencing the roller coaster ride that is hydrocephalus, be it congenital or acquired, newly diagnosed or long time hydro warrior. Please note that I am not a medical professional and any and all words are just the thoughts, opinions and experiences of a hydro mom.And despite what a large part of our world hydrocephalus is, there will be posts about our LIFE in general. We do try our hardest to not let hydrocephalus define our lives. Somedays we succeed more than others.Feel free to leave us some comment love! WE love comments around here! If you are a pregnant newly diagnosed hydro mom, I suggest you start at the oldest post and work your way forward. And feel free to contact me aimeechapman@gmail.com .Blessings ~Aimee

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